Monday, January 21, 2013

Hope Kids and more happy things!

I have been wanting to do a post about all of the Fun Lily has been having outside of the HOSPITAL!!
Lily was accepted in to HopeKids this past summer.
Hopekids is a non-profit organization for families of children with life threatening illnesses.
Hopekids provides weekly activities to give affected families something to look forward to.
A little bit of Hope can go a long way, 
especially when it seems like every day is just filled with medical stuff.
The first event Lily was able to go to was
Clifford Live!
She LOVED it.
next, Lily was in the hospital and they came to visit her!!!
They brought along a wife of a coyotes player and they gave Lily a goodie bag!
Then Shaun and I got to have a date night with other Mito hopekids families and
we saw The Trans-Siberian Orchestra.
 Next was the Hopekids Christmas Party!
This was AMAZING!!!
Lily got to ride a pony, there was a petting zoo,
She met Elmo for the First time
(this is the same Elmo that came to her party)
She got her face painted, got to meet Santa
 (who she didn't want anything to do with)
 and came home with LOTS of toys and prizes 
Plus there was an AWESOME picture booth there...
I told her to make a silly face and this is the face she made...
guess her parents ARE pretty embarrassing...
 We also got to go to
Moscow ballet presents The Great Russian Nutcracker
Lily was amazed by the dancers and tried to copy everything they did.
This is when her obsession with ballet began.
She has literally talked of ballet DAILY ever since!

This WASN'T a hopekids event but Lily was so excited about it it deserves mentioning
At IVIG they had free horse drawn carriage rides
This awesome man comes every week to PCH for the patients and gives them free rides!

This also WASN'T a hope kids event but it was AWESOME!
One of our nurses told us about 
"Sensitive Santa"
Its for kids with Autism or sensory sensitivities
(like Lily's Sensory Processing Disorder)
They have the kids wait in a quiet room with darkened lights and 
lots of crafts and coloring pages,
they had Christmas movies playing as well
and they had LOTS of Gluten free treats
(Gluten free diets are very common with sensory kids, 
and if Lily ate she would probably be gluten free)
They then took the kids out to Santa ONE AT A TIME
and let Lily have as long as she needed to get comfortable enough to sit by Santa for a picture.
It took her  about ten minutes but she sat by him and as you can see,
she smiled!
I wouldn't have been able to get her withing 5 feet of Santa at the mall!

 Lily also has developed a LOVE for "Tangled"
She has decided she is Rapunzel AND that Rapunzel is a ballet dancer
 Our sweet friend Patti had this hat made for her and SHE LOVES IT!
But since she has decided that she is a ballet dancer I cant get her to hold still for pictures!!

 HopeKids must have seen how much she Loved Rapunzel
because they called us with tickets to go see
Diseny Princesses on ICE!
 She was so excited when Rapunzel came out!
 At the end ALL the Disney Princesses and their Princes came out 
She was very excited!!
She watched the majority of the last half like this...

I have to say
(and I am a bit embarrassed to admit it)
I had tears flowing through the majority of these events.
HopeKids has given us something to look forward to besides just Drs appointments, and
hospital stays.
HopeKids has let Lily have days filled with all the wonder and awe that childhood should be filled with.
I am so so grateful to Hopekids for this!
The days that we get to go to things like this makes it feel like we are "catching up"
on all the childhood that she is missing out on because of her medical conditions.
Now, I am not saying Childhood Should be filled with expensive events and shows to make it worthwhile.
Mine certainly wasn't and I had a splendid happy childhood.
But Lily doesn't get to have carefree days.
She doesn't have a single day go by without medical interventions, from needle sticks, to
dressing changes, to meds, to machines, etc.
Her life is filled with pain and hurt and fear, 
and although we do our best to ease her pain and fear and we love her fiercely 
sometimes a show or a children's event is exactly what she needs to take all of our minds off of things
and just enjoy.
Thank You HOPEKIDS!!!

Lily is two!!!

Lily turned two on Jan 20th!!
My baby girl isn't a baby anymore!
She had an Elmo themed birthday party
 Her cake was done by Cup'n Cakes through Icing smiles
Icing smiles is an amazing non-profit organization that donates birthday cakes for medically complex kids. This cake was amazing!
The lady donated her time and resources so lily could have such an awesome cake.
Now she couldn't eat any of it BUT it made her smile so much and she wouldn't stop looking at it.
You can visit Cup'n Cakes fb page by clicking here if you are looking for a cake artist anytime soon:)
 My Elmo fruit platter...
I was very proud of this!

She was SOOOOOO happy!!!

 She wouldn't let Elmo go!
 even when she was coloring she had to hold on to Elmo so he couldn't leave
 She had to sit on Elmo's lap to open presents
She did let go of Elmo to play 
pin the nose on Elmo but immediately ran back to Elmo again.
She was one happy birthday girl!!!
Thank You to "Elmo" who donated her time to see Lily smile!
And Thank You to everyone who came and helped us celebrate the miracle of Lily's 2nd birthday!!!